First Steps on PrEP

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2013

I AM Men’s Health
Philadelphia FIGHT Rethinks HIV Prevention, Shifting from DON’Ts to DOs with PrEP
by Michelle Zei

Stephen Handlon, Malcolm Dettiford, and Miles Hunt of I AM Men’s Health
Stephen Handlon, Malcolm Dettiford, and Miles Hunt of I AM Men’s Health

Photographed Exclusively for A&U by Freedom G Photography

Don’t—the conversation around sex and HIV is full of these phrases: Don’t have sex, don’t have unprotected sex, etc. The negative connotation around HIV and sex can often make those who are sexually active and at high risk of contracting HIV feel ashamed. Silenced questions lead to less education and more risky sexual behavior.

Since its introduction to the public in 2012, the HIV preventive drug taken as pre-exposure prophylaxis, or PrEP, has shifted the conversation about HIV in a more sex-positive direction that encourages people: do live a healthy lifestyle, do examine your behavior, do embrace sexuality—and do take advantage of a new method of prevention to protect yourself and those you’re involved with.

PrEP is an HIV prevention system where people who are HIV-negative take the pill Truvada along with medical supervision and health monitoring. PrEP’s effectiveness increases with strict adherence. According to the iPrEX study, when MSM participants took Truvada consistently, their risk of infection was lowered by at least ninety-two percent. Another iPrEX study indicated that taking Truvada daily paired with condom use reduced risk by ninety-nine percent for MSM.

Philadelphia FIGHT’s I AM Men’s Health initiative has a special PrEP support group that’s been administering PrEP since January 2013. HIV prevention is especially needed in Philadelphia where HIV rates are five times the national average.

The program at FIGHT administers Truvada along with holistic health services and sex education. Staff members keep tabs on participants so they adhere to their medication and receive PrEP’s full benefits.

Antonio Boone, tester/counselor at I AM Men’s Health
Antonio Boone, tester/counselor at I AM Men’s Health

I AM Men’s Health’s PrEP program is a model for effective outreach and distribution of the pill. The Youth Health Empowerment Project and PrEP group offer holistic healthcare services to young, gay minority men under twenty-five in Philadelphia. Rather than just learning about HIV prevention, participants are exposed to nutrition and mental health counseling, and a variety of activities that invite participants to consider their overall well-being.

The PrEP program’s medical director Helen Koenig, MD, broke down how PrEP works: “PrEP is a pill that someone without HIV can take to protect themselves from getting HIV. If someone taking PrEP on a daily basis comes into contact, either sexually or through exchange of needles, with someone who has HIV, PrEP can halt the ability of HIV to make copies of itself in the cells of the HIV-negative person’s body. This happens because the PrEP medicine, Truvada, blocks the activity of the protein that HIV uses to make copies of itself. Therefore, even though HIV-negative people can still become exposed to HIV, the HIV infection itself is aborted at a very early stage.”

I sat down with Oberon Wackwitz, Malcolm Dettiford, Luis Torres, Miles Hunt, and Stephen Handlon from Philadelphia FIGHT’s PrEP support group to talk about PrEP and how it’s influenced the way they view HIV.

Michelle Zei: How did you first find out about PrEP and what was your reaction?
Oberon:
I already knew that pre-exposure prophylaxis existed but I didn’t know they were giving [it] out to people in at-risk situations other than people who are in current relationships with people with HIV. So I was here with my gay brother, if you will, and he was already in the program and I asked what he was taking and I started asking more questions about how it works and it seemed very promising to me so I signed up and started off without any initial side-effects. I did stop at first but, when I started back up again, I had a few [though] after a week they were gone. It was pretty cool to get involved.
Malcolm: I heard about it through a friend. I found out about it about a year ago and I’ve been taking it ever since then. The effects I experienced weren’t too rough but it’s just fine. Now I know I can have sex with random men with protection, and my risk is lower.

Noel Ramirez, program coordinator at I AM Men’s Health
Noel Ramirez, program coordinator at I AM Men’s Health

Luis: When I first heard about PrEP I was interested in it. I didn’t really know what was going on so I just kept coming every Monday to see how it works and what the benefits are of taking it. I just feel like it’s a great thing to offer to people with a higher chance of contracting HIV because they have risky sex sometimes.
Miles: Caitlin told me about the program. At first, I was like I’m not doing it, it’s too much paperwork. But the more she explained it, she told me it would lower the risk and it’s free so I took it home and read it. I came back the next week and signed up for it. Caitlin said PrEP lowered the risk by ninety percent so I said, okay, if I’m going to have sex with males that may or may not have HIV, I should take it.

At first it made me sick; then I thought about it in the long run, and it gives me a better outlook on life and lowers my risk. It lets me know I can still live my life taking it and I can talk to people who are HIV-positive. I have a sense of happiness that other people are taking it and I’m not the only one. The support group lets me ask people if they’re going through the same thing.

How did you grow up viewing HIV?
Oberon:
When I was younger and I didn’t know about PrEP, I thought HIV was the end of the world. You would take medication and your sex life was gone. There was this incredible social stigma, you wouldn’t be able to connect with people as you normally would. To an extent some of this is true, but my view was very unrealistic and it was a really scary thing for me.
Malcolm: Someone in my family has it so I was like, oh my god I’m going to get it. When I was younger it scared me, but now it doesn’t scare me as much. Even though I wasn’t sexually active I was scared I could contract it because I didn’t know anything about it. Then, I turned nineteen and learned stuff about it. I felt like I was bound to get it because I’m a gay male and everyone is always saying that I’m going to get it.
Miles: I was scared, I thought if I caught it I would die instantly. I heard about it but it didn’t really affect my life. When I moved to Philly I knew I had to be careful because there’s a [large] population of people with it.
Stephen: In tenth grade, I watched the Philadelphia movie. It was kind of weird because there weren’t any out gay people in my school so that was like the only depiction of gay people, which in a sense was misleading. I got more educated when I was in college through classes and my own research. Even when you get tested, it’s like, okay, good, you’re negative, but they don’t talk to you enough about lowering your risk.

Has PrEP changed the way you view HIV?
Oberon:
I can take my sex life back into my own hands so I don’t have to feel afraid if I’m in a situation that’s considered

Caitlin Conyngham (left), administrative manager at the Youth Health Empowerment Project, and Dr. Helen Koenig, who acts as medical director of I AM Men’s Health
Caitlin Conyngham (left), administrative manager at the Youth Health Empowerment Project, and Dr. Helen Koenig, who acts as medical director of I AM Men’s Health

risky, even if it’s with a condom. It’s also opened my eyes toward research around HIV. It’s amazing that since the HIV/AIDS epidemic we’ve gotten as far as we have. It’s very important because a lot of people within the gay community are not using condoms, period. This gives us [as PrEP users] the upper hand because regardless of how we view unprotected sex morally, the fact is that [some people are having unprotected sex], whether we say it’s wrong or right. We should be proactive and that’s what PrEP does. This at least keeps people from contracting one disease that’s very life-altering and incurable. On a larger scale, if everyone was taking this drug, HIV rates would go down significantly in our community.
Luis: Since I started taking it, [and] of course I’m worried about [HIV infection], but I feel my chance is really small. Since I’m on this medication I feel like I might not be able to get HIV but I still should worry about other things as well.
Stephen: Using it has changed how I think about HIV because I feel like in public health there’s almost too much focus on things after they happen; there isn’t as much focus on prevention. I guess it’s partly just human nature to think of something after the fact, but I think if it’s more widely available it would be better economically as well than to treat people with HIV individually.
If you don’t use condoms consistently and correctly, it’s basically like not using them at all. Being here, a lot of teens aren’t using them consistently and correctly. It’s really hard or people just aren’t doing that. It’s better to acknowledge that and deal with it.

What are some misconceptions or concerns that people have about PrEP?
Oberon:
I will say that honestly that Truvada alone, without any support or programming like this, [may significantly impact people’s views about the importance of other prevention tools]. It makes people more comfortable with having [condomless] sex because they’re thinking, ‘I can’t get HIV.’ But they fail to recognize that they can get other diseases.

The beauty of a program like this is that it’s a guide through that process—yes, we’re going to get the drug but also other means of prevention for other STDs. We learn about other diseases and get tested for them which reminds you that Truvada can keep HIV at bay but there are other diseases—this is the reality. Sex can get messy and you need to take care of yourself. PrEP is more than just a pill; it’s a whole system.

It’s very odd that people have this adversity to taking the medicine. A lot of people don’t like the idea of taking it. I was talking to some people today and they were very iffy about it; they were questioning it heavily almost like it’s poison. One person was saying it’s an excuse to not wear condoms. People aren’t wearing condoms anyway—that’s the point; that’s why PrEP prevents [at least] HIV [among those who go condomless]. It’s crazy that people have this view of it. Why is this a thing, especially amongst poor, minority people that are at higher risk? They have this aversion to medical treatments that could be potential lifesavers. I don’t understand why it’s like that; I think it’s something that seriously needs to be looked at. It’s a big issue because how can you lower the overall rates in Philly amongst higher risk populations if they’re afraid of it?
Luis: When I bring it up to my friends, a lot of my straight friends, they ask if it’s been tested. Like, it’s FDA-approved—of course they had to test it on people. I feel like people judge because they’re oblivious to the drug but I think people should know more about it. Doctors should tell people and if doctors don’t know they should be informed as well. I try to give PrEP a good name because it benefits you in the long run. I feel like it would be good for everyone.
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The dedicated staff at I AM Men’s Health have seen firsthand where other HIV prevention tactics fail or fall short. In particular Noel Ramirez, LCSW, MPH, program coordinator at I AM Men’s Health, noted the danger of relying solely on condoms for HIV protection.

“With gay and bisexual men, there’s a large context of shame that informs their identity formation. PrEP really helps dismantle that. We’re often hard-pressed to push the condom conversation that silences the conversation that might make us uncomfortable. This forces us to get to the core and stigma around gay sex. That kind of stuff isn’t addressed when you give a kid a condom and say ‘Have safe sex, always safe sex!’ Clearly there’s a disconnect because our incident rates, particularly with this population, continue to rise every year,” Ramirez said.

Despite PrEP’s accessibility (it’s covered by all insurances including Medicaid and Medicare and available directly from Gilead Sciences, Inc., with a prescription), there are still obstacles inhibiting people from using PrEP.

“Folks who would benefit most from PrEP—we know the highest group for acquiring HIV is young MSM of color—are the least likely to be in medical care at all. These are folks least likely to have primary care and primary care providers have the least experience working with them. We know that clinicians and physicians are notoriously bad at assessing who is at risk. As far as I’m concerned, anyone who is sexually active is at-risk. It may not be a sentiment shared by many providers unless you’re using drugs or have many sexual partners, but other people are also at-risk,” Dr. Koenig said.

PrEP also empowers people to take more control of their sex lives and remove some of the stress that accompanies sex, according to Caitlin Conyngham, the administrative manager at the Youth Health Empowerment Project.

“We really believe everyone should have the choice to access PrEP the same way you talk to people about their risk of pregnancy about birth control. We know that PrEP works nine times out of ten to prevent HIV if you take it at the same time everyday. That can be a game changer in how you want to have sex. I tell people you shouldn’t be terrified every time you have sex. This allows you to take that fear off the table a little bit. It puts it in a different context because you’re not making the decision when you feel emotional or aroused. You’re making the decision over breakfast or dinner and we all make better decisions when we don’t have all the other mess on the table,” Conyngham said.

In May 2014 the CDC published clinical practice guidelines for PrEP, helping more clinical practitioners understand PrEP as a highly effective HIV prevention strategy. The guidelines advise clinicians how to determine who is considered at risk for contracting HIV and could potentially benefit from PrEP. MSM and people in relationships with HIV-positive partners are not the only groups considered at risk, a reminder to the public that HIV is not an issue confined to a specific community but also includes heterosexuals that have unprotected sex with partners of unknown HIV status. These guidelines begin to recognize the changing reality of what it means to be “at risk” and invite broader discussion and participation surrounding HIV prevention.

For more information on PrEP, check out the CDC’s recently updated guidelines by logging on to: www.cdc.gov/hiv/prevention/research/prep/.

For more information about Freedom G Photography, log on to: www.freedomGphotography.com.

Michelle Zei is a freelance multimedia journalist. As a journalism student at Temple University, she developed a passion for grassroots organizing and community media. Her interests include HIV/AIDS, the Palestinian-Israeli conflict, millennial activism, and immigration. She believes in the power of the pen and the Web to educate and unify communities. Follow her on Twitter @michellezei.